So, I haven't been here for a while. I feel I owe you all an apology! The last few months have been absolute chaos.
I'm not really sure where the beginning is, but towards the end of last year, September in fact my little family went from a two parent family, to a one parent family. I am not prepared to go into details. But it was a whirlwind of court, changing the logistics of the house, there was a kick back from the children, to see how far they can now push me, and it's been quite chaotic!! All this, while being very depressed, and being offered no extra support whatsoever. Where I live I have no family support nearby, and very very few friends. It's been far from fun, but I am pretty sure the children and I are on an even keel now!!
So, during all that, in October, Rowan and Ayden were admitted to GOSH, under the Endocrine team for testing. These tests were mainly for Ayden to be honest, and just a general 'let's check Rowan too' type thing.
|We found those magic wants you are all looking for!|
So they did a profile for Rowan, and a fast, to see how long he can fast. He managed 4 hours. Which is about the same as last time thankfully. So that means he can go 4 hours without eating or drink anything but water, before he gets to a 'dangerous' level. While we were there, Rowan's gastroenterologist came to see me. They are concerned about the way that Rowan eats (like a pig) and the quantity and frequency he eats, and that the more we reduce his TPN by, the more he seems to eat!! There are a few things they would like to test him for, the main one being Prader Willi syndrome. It's highly unlike to be this, and if it is, then it's the most unusual presentation they have seen, but the fact that he has hyperphagia (obsessive compulsive eating) is the biggest factor in PWS. They also are looking at a referral to see another doctor at Addenbrooks, to look at the chemicals in Rowan's brain. There are problems again with Rowan's weight, but more to do with being too heavy for his height. In reality he's not gaining very much weight at all, but he's not gaining any height, meaning his BMI is getting too high. Due to this we are now cutting down his TPN, to try and get him off of it, or at least to a 'static weight' situation.
For Ayden, there were a few developments. Ayden had a test that stresses the body, and then they check levels of hormones to see whether they are working correctly and at the right level or not. For Ayden they wanted to check his growth hormone mainly. A previous test at another hospital deemed his growth hormone level too low, therefore he was on daily injections to replace this hormone in the hopes he would gain height. This test however, resulted in completely normal growth hormone levels. It looks like he just needed a little 'jump start'. Now he no longer requires growth hormone injections! The main reason that Ayden needed to be under GOSH though, was his blood sugar levels. I stated that they were too low, the local hospital decided I was a paranoid parent. I managed to get another doctor to refer us to the same Endocrinologist as Rowan. So we went in for 'controlled fasting'. There was a big discussion between the doctor and myself about what the results may or may not show. So we began the fast. I had repeatedly said that Ayden was waking up at 3am, with his blood sugar being too low. We were eating dinner at around 5pm. Therefore only managing 10 hours.
Basically, we starved Ayden, and checked his blood sugar every hour, to see what was what. After 8 hours, his blood sugar was 3.4. Usually we would be treating that. However, in order to try and find the cause, his blood sugar needed to go under 3. 2 hours later, 10 hours into the fast, it was 2.9. Just as I said, 10 hours and it's way too low. It took quite a long time to get the 'results'. The results were this 'Ayden fits into a very very small group of children who can not fast, for reasons that are unknown. We are pretty sure that, like the other children he will outgrow it by the age of 8 or 9.....so only another 5 years to go' in the meantime, he can not 'fast' any longer then 10 hours maximum. That means waking him up before I go to bed for a drink, with some carbohydrate powder in. And it means a very specific plan if he's unwell. Lots of blood sugar testing, and precautions. Generally though, he's ok! I was a little upset to start with, at the prospect of blood sugars for the next 5 years and precautions and worrying about ANOTHER child's blood sugars, but at the same time, I was relieved that the doctor took me seriously, and identified that I was not a paranoid parent, just seeing problems in Ayden because Rowan has problems. You'd have thought by now, with all the 'little things' they ignored with Rowan, they'd be a little more cautious as the 'little things' are actually 'big things'!
|We went to a Pirate Party at Hamley's!!|
Since then we've just been battling through the days, me and the kids. Re-jigging life, and trying to get things working for the new setup. Working as a new team. Lots of trial and error. The biggest battle I have had though, is getting support. I was assured that once I became a single parent, I would get a greater level of support, especially with my mental health issues being present. This wasn't true, and still isn't.
Rowan is due to go to GOSH at the end of January for some motility testing, to try to understand how his gut is (or isn't) working. These tests were first mentioned when Rowan was 9 months old. He will be 4 in April. Originally these tests were going to be done in November, but with the change of situation at home, it was pushed back to January. I knew the exact dates during the admission in October. The plan, from what I had been told, was that social services would find me a 'respite family'. So, if Rowan ever needed to go to hospital, or I needed a break, or a school run doing or something, I would call this family, and they would have the children/child for me. To offer me a safety net, and options. So...I informed social services of the date of the admission as soon as I was told it. Nothing was really said.
Time has gone on and on and at the beginning of December I started to worry that this 'family' had not yet been found. (I was also getting extremely frustrated that at that time, they hadn't actually done anything to help me, despite me struggling with the logistics of school runs etc). So I started hassling. We have 6 weekly meetings to discuss what's going on, who needs to do things, what I need extra help with, any concerns etc. These meetings tend to always go the same way. Although, the meeting just before the children broke up from Christmas, was shocking to say the least. I was informed, a month before the January admission, that they had known about since October, that they would NOT be offering me ANY support. No childcare. There are no 'resources'. So what am I supposed to do? I have a child that needs to go to GOSH for tests that have been on the cards for 3 years. And I have 3 other children who can not come with me, need to go to school for consistency need stability. As I said earlier, I have no family nearby and very few friends. (2 in fact!). What was I supposed to do? Social services weren't interested. They came up with a whole host of suggestions all completely unsuitable, from putting them with family members hundreds of miles away who don't know my children, or their needs, missing school for the period of 2-3 weeks, to asking me to leave Rowan at GOSH, visiting him at the weekend.
I was distraught, and felt very very let down. I was also very very angry at the suggestions, I am trying to keep my children as stable as possible. Give them consistency School is the constant that they will need at a time when Mummy and their little brother will be away. They need to feel secure and know what's going on and when at all times. Social services were not concerned about the same things I was. For them it was a 'resources' issue. Not a 'need'. And who bares the brunt of the lack of resources? My children and I. So, I had been put in a situation that meant I wouldn't be able to take Rowan to GOSH, for the much needed tests. Therefore, not meeting his medical needs. However, I had no childcare, therefore I'm not meeting the other children's needs either. I can't win can I? I was called manipulative and obstructive and all kinds of other things. Is it so wrong that I want what's best for my children instead of what is best for their budget??
|Trip out of the hospital for a 'offee' with Mummy (ok his is tea)|
In the middle of all this, Rowan was admitted to my local hospital. He had to stay in overnight. He needed IV antibiotics for 10 days, 4 times a day. For a feeding tube that had been infected for close to 5 months with no let up for more than 48 hours. I was distraught. I was on my own, with no help, and now I would have one children in hospital and 3 at home. What was I meant to do? We called on social services. It's a crisis right? They are there to support me right? WRONG. Social services weren't interested. They told me Rowan was safe in hospital and what was my problem, leave him there and go deal with my other 3 children. They have no idea. Would you leave your 3 year old in hospital all by themselves? I have to admit the play staff (also known as pink ladies) were fantastic with Rowan, as they always are, and without them I don't know what we'd do!! The nurses fed Rowan food that he was intolerant to, clearly not reading his notes AT ALL. And were are not talking ONE thing, we are talking LOTS of things, from toast, to glass of milk, to cereal with normal milk on, allsorts. Rowan spent a LOT of time on that ward, they are supposed to know him. And yet, they got his diet SO wrong, when he's been on the same diet since he was born!! We had all kinds of incidents, from TPN being connected 4 hours late (and risking his blood sugars dropping, but no one checked his blood sugar so they wouldn't know if he was hypo or not) meaning he was connected 4 hours longer the next day, preventing him from being to go out for walk, or anywhere infact, to not changing his nappy frequently enough leaving him in a right soggy dirty mess. This is where he's safe yes!? Really!? He wasn't poorly, he just needed some IVs, therefore on the priority list, he was fairly low down. But like I said, the play staff were fantastic, as always. They are completely indispensable.
|Somedays the pain wins.|
Anyway, social services clearly didn't help. I ended up a frazzled mess, couldn't work out where I was going or when or anything. I had the RSPCA turn up, accusing me of having a dog 'living in filth' which was rubbish, and the case was closed. School pulled it out the bag. They put all 3 of my children into their after school club. Which I must remember to call 'zigzag' or Ayden shouts at me loudly!! So for the whole 10 days (well 8 school days I think it worked out to be) they made space for my children. That way I could take them to school, run home, do an hour housework, and then dash to the hospital to see Rowan for the day, pop out for appointments/supplies, then pick the children up from school later on. It was chaos, as I also needed to make sure Katrina still got all her activities in that I had promised, Brownies, young carers, and other activities too. I made it through though, by the skin of my teeth. Still very concerned about the GOSH stay though.
Then, my Christmas Miracle occurred It appeared in the shape of a Head Teacher. The head teacher was at my meeting, as he is now regularly, and is a wonderful source of support and information for me and my children. He had a suggestion. A suggestion that sounded ridiculous to start with. A suggestion that seemed pointless and hopeless, but I was desperate. What was the suggestion? That he would write a letter, appealing to the school community to help out in this situation. I had nothing to lose. I wasn't overly convinced that there would be any response, we are talking 3 children, for 2-3 weeks. Who in their right mind would take that on? I suggested to the head, that dependent upon the response, I would be happy for the children to be split up if necessary, maybe the break from each other would do them good? Appreciate each other a bit more perhaps. It may be easier to find people to have them. And if it meant they could still go to school, then it would be worth it. I wasn't hopeful though.
The meeting was held on the Friday. Monday morning I proof read a copy of the letter that was sent out. Here is a copy of that letter:
The letter went out to all the parents on Monday at the end of the day. This was the last week of school, the children finished school on Wednesday for Christmas. Tuesday morning, the childminder dropped the children at school for me (which I pay for). I took Rowan up to 'nerfery' for his last day, and his Christmas party. (By the way, for anyone who is interested, Rowan LOVES his nursery!!!) As I stood in the queue to collect Rowan at the end of the party, 3 members of staff informed me that the head wanted to see me. Cameron and Ayden were going to the childminder after school, and usually Katrina would too but she was due to go out with Young Carer's that day so I was taking her home. I figured I had enough time to pop and see what the head needed to see me for, before Katrina came out! I found the head, and he informed me that he'd had a really good response from the letter. Less than 24 hours after it went out.....we had had responses. He'd looked in his diary at the list of names and I was gobsmacked. Very very very shocked.
Some of the names I didn't recognise. Others I did. At that moment it hit me, these people care, and want to help. School asked people to open their homes to my children, and so many did. Some people offered to have one child, some offered to have 2. With the amount of names on that list, I knew that we could sort this. As I said, some of these names I recognised. Why did I recognise them? They were my children's friends right? Wrong. They were teachers. Yes. Teachers were offering to look after my children for me while I take Rowan to GOSH. I cried. I just couldn't believe what was happening and I wasn't really paying attention. The head told me that he would be happy to have ALL 3 of my children at the weekend, so they were together for weekends. Another teacher at school also offered to have them for the weekend. The school will police check all the people that offered to make sure they are safe (school suggested this, not social services). So, on the Wednesday I know a few more people approached the head, and even now as I type this, I am in shock, and disbelief.
Why did I write this? I just want everyone to think a minute about their school. Would you approach them to ask for help in my situation? If you work in a school, is this something that your school would offer vulnerable families? Would you even consider asking them? In my situation I have found an amazing school. I have said that repeatedly, and it's just confirmed for me over and over again. I never would have asked. I am not a social butterfly. I appear at the school, and get the kids into the classroom, dash home. I appear to collect my children, no conversations, grab all the children, dash home. My children don't have play dates, or sleepovers. I don't meet the other mum's. I don't stop and talk to other parents if I see them in town. While waiting to collect my children I find the quiet corner. And yet....everyone knows who we are. OK, so the small child in the wheelchair with mickey mouse wheels probably screams 'GOSH patient' but still. If your school sent a letter home asking for help, would you help? Would you see if a family member of yours would help? Grandparents? It is such a simple idea, and for me had huge results. It highlights the importance of a good school. Not only that, but for me, it highlights that the head teacher of my children's school has the confidence in the school community that they would help. That says a lot about him.
Social services budgets are being cut. Resources are being withdrawn. You've probably heard this on the radio or news or read it in the paper. There are lots of things we 'used' to get, that are no longer available. From school runs, to sessional workers, to respite, to play schemes being paid for, to a lift to appointments. I get nothing. I do not agree in any way shape or form with the way my case has been and is being handled. I do not believe that a family in the situation I am in, should get no help. In this case, social services' cut backs, would be preventing Rowan from receiving tests and treatments that he desperately needs, and has needed for a long time. This is exactly what is happening around us, you may not know about it, it may not affect you, but it's happening.
|Ayden had his face painted as Batman!|
So, I am just going to finish by saying, that we WILL be going to GOSH at the end of the month, and while this is far from an event to celebrate, I celebrate the fact that the school community, the parents, and teachers, TAs, dinner ladies, cleaners, receptionists, and the headteacher. Everyone is so important, and so supportive. I just wanted to highlight the fantastic school that my children attend. And to anyone from the school community who reads this, I just want to say Thank You. Even if you couldn't help out, the fact you maybe thought about it, or read this blog, tells me that you are interested (or very nosey!) and spent a few minutes (ok maybe 10 this is a long post) thinking about me and my children. Thank you.
|Rowan has new 'Mr Tumble' wheelchair gloves!|
|Cameron was evacuated! And LOVED it!|
|Katrina had her face painted at the 'Believe in Magic' party!!|